Crowdsourcing a Survey: Health Topics

One of our core findings (8 in 10 internet users, or about two-thirds of U.S. adults, look online for health information) is based on a series of questions that is tweaked in each survey. We re-word or separate concepts, cut some topics, and add others. Are there topics missing from the list? Which ones deserve to be repeated this year? No promises, but I asked for similar feedback in 2008 and implemented a few of the suggestions (see the “2008 only” topics below).

Our inclusion of “experimental treatments” is a way to scoop up anyone who is looking for clinical trials (among other options) but I like the idea of asking the question directly. I assume (maybe wrongly) that pharma companies have researched this but not released the data publicly. If anyone knows of a benchmark figure, that would be very helpful.

We have not asked about devices – very good addition. What are the most common ones, in case we need to prompt respondents (as we did in the “stay healthy overseas” question).

Since Baby Boomers start turning 65 next year, researchers say look out for an explosion of cases of Alzheiemer’s disease or other dementias. Which means, many of us will be in the position of becoming caregivers to our parents. Why not ask how many people go on line for information or support as caregivers?

Amber, great minds think alike! We plan to ask respondents if they currently care for a loved one, but I really like the idea of asking the full sample if they have used the internet to gather caregiving info — maybe it was for a friend and they themselves do not provide direct care, maybe they were a caregiver previously but their loved one passed away.

would a question about trusting data from non-government sources be something to consider?

I’m thinking about the trend towards open data access and how the development community can come up with health-related apps that might be useful/interesting to the public if data was made more widely available. Obviously private, patient history data can’t be used but if there was access to anonymized data or data from public health surveys that the dev community can use, then would the public trust the info? Find it useful? etc.

Love your surveys – always so useful. Thanks for being such a great resource.

BJ Fogg, director of the Persuasive Technology Lab at Stanford, led the two studies commissioned by Consumer WebWatch.

Dianne on July 16, 2010 at 11:25 am

Would be interested in question(s) that look at how patients communicate with their physicians about online information.

For example: “Have you discussed your online research with your physician? Did you receive guidance on the research you identified?” “Have you asked your physician to recommend health information web sites (general sites or relating to a specific condition)? Did you receive recommendations?” “How confident are you in your ability to assess whether online health information is credible? Have you asked your physician for guidance in determining the credibility of online health information?” [It would also be good to have questions to probe patients perceptions of their skills/confidence vs actual skills.]

Would like to get at the issue that patients are feeling more empowered to find information but are still frustrated by the conversations they are having with their doctor.

Know you have many other questions/topics you’re looking at. These are just some of the things I’d be curious to learn more about.

Susannah, thanks for asking the crowd to chime in. How about information about some aspect of health information technology – that is, have you sought information about electronic health records, personal health records, or mobile health apps (as examples)? DHHS is trying to measure this now, so it would be interesting to have the Pew statistic to complement the DHHS findings. JSK

I’m a little limited because I’m commenting from my phone en route to date night with the husband, but with the knowledge that you know and understand my arguments for why childbearing is a potential “gateway drug” to health participation, I’ll put in my plug for pregnancy, childbirth and infant feeding.

This is probably not what you’re looking for in the context of this survey, but I’ll share some ideas that may be interesting to explore in other surveys.

I find myself wondering about what people have shared online, not just what they have sought online.

I’d also be interested in how many people have posted questions (not just searched for information).

And I’d be interested in whether or how people have acted on information they’ve found online … and I think it would be particularly interesting to compare what kind of actions and other impacts come from health information found online vs. other sources (e.g., direct f2f interactions with health professionals).

Yes, those Qs are broader than the scope of this particular query, but they are right in line with what we want to measure – if we can – the next phase of the social life of health information. Now that we’ve established that it’s happening, it’s pretty widespread, we need to find out the impact of peer health info.

Use of/reliance upon complementary medicine based on non-Western systems? I’m thinking especially of Traditional Chinese Medicine (TCM), acupuncture and Ayurveda. Would be interesting to find out if people are referred to any/all of these by allopaths and in which situations, if/how/when healthcare consumers pursue any/all of these options despite non-reimbursement. I realize Ayurveda may be a total mystery for most but my guess is TCM and acupuncture has become mainstreamed, especially for pain management and orthopedic injuries.

How about finding out how many e-patients are looking for information that will help them to better understand their lab tests? Our site gets in the neighborhood of 2 million visits a month, so I think there is a lot of demand for this often overlooked aspect of healthcare.

Dave, our site is labtestsonline.org, which offers professionally-reviewed information on testing. The 2 million visitors that get each month are proof of that interest – and the thousands of comments we get from a grateful audience are further evidence that both patients and many medical professionals are looking to fill an information gap in the healthcare system.

Hi Bunny, that’s an important question, but I wonder how we could phrase it — would we ask people if they have looked online for information about why they should take their meds? Or maybe ask respondents if they have ever researched a “treatment holiday” or “giving their body a rest” from meds?

One of the most valuable parts of the CHCF survey on health IT released this spring (and I’d give YOU full credit for suggesting this) was that it over sampled people who are actually using health IT. This made for interesting comparisons between health IT users and non-users, including comparisons between what non-users said they wanted to do online and what actual users are doing. There was a lot of interest in what health IT users value, their privacy concerns, their relationship with providers, and what additional devices or services they use or would like to use.

There were also some interesting findings about the impact of health IT use on positive health behaviors — like asking your doctor questions. These were particularly pronounced among minority and low income groups. It would be cool to dig deeper into these findings and see if you can replicate them or understand them better.

As we look to mobile and smartphones I would want to ask questions around this as well as seeing for those who use apps or services do they check the credibility of this material. This measurement of health website credibility had always been well interesting. Yet a mobile application has reviews from other users and you get to know the source. Wonder how they stack up against each other web vs mobile app for the credibility factor.

Susannah’s colleague, Aaron Smith, recently released the results of a survey on mobile information access, which shows – among other things – that 38% of mobile phone users use their phones to access the Internet, up from 25% a year ago.

I’m not sure what Jack means by “a mobile application has reviews from other users” as I’ve seen reviews and reference sources on mobile apps, desktop apps and web sites (which can be accessed via mobile or desktop / laptop).

What I wonder, though, is how the constrained size and interface of a mobile device affects the willingness of information seekers to delve more deeply – or broadly – into online sources to verify the information they find.

I suspect that people who read email on mobile phones vs. laptops / desktops tend to read less of the messages and read / skim them more quickly, and suspect that mobile phone access to other information sources would promote shallower and/or quicker processing. Sounds like a fascinating area to explore further, though perhaps in a broader context beyond health care information.

Dennis (Investigator/Negotiator at Medical BillDog) on July 21, 2010 at 1:17 pm

I think your suppositions about mobile use of resources are unfounded. I hardly ever read email on the laptop anymore. I write all of my longer letters there, but I read most of my email on my iPhone. Why would phone reading and research be any quicker or more cursory than on a large screen? I’ve read whole novels on my phone. Whether I read or look up information on the phone or laptop is more a function of where I am and which tools are available than of the thoroughness with which I intend to study.

If I may be impish, I think your supposition that your iPhone use represents most smartphones is unfounded. :-)

Recent months have taught me the hard way that it’s dangerous to read email on my BlackBerry: I routinely missed things that weren’t near the top. Never mind reading a book.

Now, you may (rightly?) insult my BlackBerry as being inept, not at all what a phone “can” supposedly be – but that would put us right back in the reality Susannah reported: the vast majority of phone users don’t have anything like an iPhone.

It would be fabulous if Apple dropped the obnoxious pricing including AT&T’s crappy service, but as SFox often says, anthropologists like Pew only report on what is, not what should be.

While I certainly don’t want to make too much of this index – given the aforementioned caveats – it may be marginally better than Dennis and I offering up our own experiences and assumptions on seeking information on mobiles vs. laptops or desktops.

In any case, here’s what they have to say:

Mobile phones are not a learning tool. Mobile users (76%) are much less likely than all users (92%) to go online to learn. Learning requires time and patience, something mobile phone users are in short supply of.

They (64%) are 1.5 times less likely than the traditional user (96%) to go online to educate themselves They (64%) are 1.4 times less likely than the traditional user (94%) to go online to research. They (95%) are more likely than the traditional user (86%) to go online to keep informed.

Well, Joseph, I can live with being wrong. Wouldn’t learn much new if I weren’t. I also don’t mind discovering that my uses of my iPhone differ from everyone else. I wonder, however, how those figures vary across racial identity. I saw a post not long ago (I thought it was from Susannah) positing that people of color were likely to have no other source of Internet access than their phones. Not trying to throw in a wrench, but definitely an additional aspect of this discussion worth considering. I hope I haven’t mistyped anything (I’m on the laptop this time) because I’m too tired to proof anything. Good night, kids.

I’m definitely interested in figuring out how to talk with people about (and then measure) how they decide which information source to turn to and, separately, which sources they trust.

One might turn to a mobile app to answer a quick question, for example, and then explore the question further using a different source (even -gasp- offline!). As I’ve written in other comments, BJ Fogg and Eszter Hargittai are two researchers who are doing good work in this area (in general, not just related to health).

I don’t know if we’ll get to these questions in this survey, but I can say that Pew Internet has new data on cell phone usage among adults that will be released later this summer. Headline: people are expanding their activities. I talked about it a little bit in this vid:

Fair enough, Dave, but Blackberry isn’t the only smartphone alternative to iPhone. Also, for that matter, the Boston experience isn’t the only view of AT&T. Here in Austin, their service rescued us from the crappier local Sprint experience. After the iPhone, however, I would never be able to put up with a screen that truncated my messages or wouldn’t let me read the latest Cory Doctorow.

– A question on “when” people turn to the Web to find disease information would be helpful — how soon after diagnosis? How soon after experiencing a side effect or a failed treatment?

– It would also be interesting to learn how e-patients share online health information with their care partners .. or how care partners share information with patients. Is the preferred method of sharing a face-to-face conversation? An e-mail or text? A ‘send to friend’ button?

Another set of excellent research questions — going into the mix! We are still in the “build it up” stage but Monday will begin the “cut it to shreds” stage (ie, the reality that we can only keep the respondents on the phone for 20 minutes).

Jonah describes an experiment in which a lab assistant sat in a group brainstorming session in which people were associating words with images shown on slides, and intentionally shouted out wrong answers (under one treatment, called the “dissent condition”).

The power of such “dissent” is really about the power of surprise. After hearing someone shout out an errant answer – this is the shock of hearing blue called “green” – we start to reconsider the meaning of the color. We try to understand this strange reply, which leads us to think about the problem from a new perspective. And so our comfortable associations – the easy association of blue and sky – gets left behind. Our imagination has been stretched by an encounter that we didn’t expect.

And just to be clear, in this context: I may be wrong about my earlier supposition regarding people’s propensity for seeking depth and breadth of information on a mobile vs. laptop device, but I was not intentionally so.

I laughed out loud the first time I read this comment and I’m still laughing – this is why I love open-thread conversations. You just never know what someone is going to come up with to inspire new ideas, new directions. Another important aspect: we have kept this conversation civil, friendly, and even amusing – more ingredients for keeping it open to everyone: newcomers, familiar voices, etc.

After having beat this horse to death on threads in this blog post, I decided to investigate further. I will spare readers of this thread more long comments (here), but anyone interested in what I discovered is welcome to read – and comment on – my blog post about mobile internet intent, action and inaction.

I too have enjoyed the mobile thread for its civility and humor, particularly Joe’s last comment, but I’ve been wondering about one of the initial comments in the thread regarding credibility of mobile apps. A lot of effort has gone in to developing trustmarks for healthcare websites – is anyone doing this for mobile apps? And while I’m asking, I’m wondering whether Pew has investigated the value of trustmarks among the healthcare information-seeking population?

We asked our most in-depth questions related to trust & credibility of health information online in 2001. Here is the key section of our 2002 “Vital Decisions” report in which I compared two ways of asking the questions (and why researchers get quite different answers):

I have been meaning to write a blog post (and at this point, maybe a whole report) about the questions I am now thinking about regarding “seals of approval.” It was a hot topic at Health 2.0 Paris: gov’t oversight of online health content, the HON Code, etc.

Bottom line: I don’t think we can do justice to the topic in this survey, but I am eager to explore it.

Susannah, thanks, I recall that report, and the URAC and WebWatch surveys that it refers to. My personal take is that users don’t consciously seek sites with trustmarks, but when they see something that looks like a trustmark, they accept what the site says a little more easily. I’d be very interested in any further work you do on the topic. Perhaps over time experienced health information seekers have grown to be more cognizant of such marks?

The need for trustmarks in healthcare and health information has existed long before the Internet, but the convenience of the web makes the need more relevant than ever.

Glad I’m not the only old-timer around here, remembering back to the early 2000s :)

As to trustmarks, I would like to explore how people decide which of their friends/peers/family members/fellow patients to trust. When Friend A tells you to treat a symptom one way and Friend B says to do it another way, how to decide? Extend that online and you have a health social media conundrum.

Note: I won’t be exploring that line of inquiry in this survey tho! (Just to set expectations.)

Patricia Joseph on July 23, 2010 at 9:31 am

Last week I tried to search for info on why small cuts seemed to take forever to heal recently. Terms “blood clotting, scabs, healing, cuts” yielded nothing. Is it a vitamin deficiency? What? Anyway, categorizing how a physician LEARNS about a condition, the taxonomy of the medical establishment is not how patients THINK about what’s happening to them. So I support more info available, searchable in the way that patients think about the situation, rather than how the medical community classifies it.

One section of our survey will try to measure the helpfulness of professional health resources (doctors, nurses, etc; online and off) vs. non-professional (friends, family, fellow patients; online and off). We don’t have room in the phone survey to explore the different ways people describe/think about their health questions, but I love the idea for an online, qualitative survey in which people can write essays and give examples.

As we’ve discussed, I’m very curious to know what folks do with the information they’ve looked up. For example, you’ve shown that over half of American adult internet users have looked online for exercise or fitness information. Are they couch potatoes or marathoners? Where do they fall along the pre-contemplation > contemplation > preparation > action > maintenance spectrum when it comes to exercise (or any other topic)? In essence, what can we, as health professionals, take away from this information so that we can encourage Americans to let more than their fingers do the walking?

It’s really helpful to have you query a wide range of topics, because it allows for comparisons of relative importance among the topics. (My recent favorite: More Americans looked online for information about exercise and fitness than for information about prescription or over-the-counter drugs, doctors, or hospitals).

Thanks so much for crowdsourcing your survey – I look forward to the next set of results!

We closed the questionnaire yesterday and sent it off to Princeton Survey Research Associates International (our polling firm) to be translated into Spanish and coded to go into the field early next week.

I am *really* excited about this survey. I probably say this each time, but I think it’s true for this survey — it’s our best yet, many thanks to the suggestions I have received here and from other peer reviewers.

One thing that would be interesting is about medical devices. They are increasingly used more and more. I wonder if people actually look up information or try to find testimonials before they take the big plunge of getting one?

I have to hunker down to analyze and write it up, but stay tuned to pewinternet.org and e-patients.net for updates. Or follow me on Twitter: @SusannahFox

One thing I can do is let you know which health topics made it into the final survey:

a. Information about a specific disease or medical problem b. Information about a certain medical treatment or procedure c. Information about doctors or other health professionals d. Information about hospitals or other medical facilities e. Information related to health insurance, including private insurance, Medicare or Medicaid f. Information about environmental health hazards g. Information about pregnancy and childbirth h. Information about end-of-life decisions i. Information about long-term care for an elderly or disabled person j. Information about food safety or recalls k. Information about drug safety or recalls l. Information about how to manage chronic pain m. Information about medical test results n. Information about memory loss, dementia, or Alzheimer’s o. Information about any other health issue

Thanks again for all your help suggesting new topics and encouraging me to repeat some trend questions. Apologies to anyone who is disappointed that their topic didn’t make it – there is always a next time!

I am an airline safety professional. My daughter is a long time flight attendant who has been injured. There are very many pilots and flight attendants who have been injured by oil fumes laced with an organophosphate in aircraft environment. How many passengers and aircrew have been neurologically injured and/or disabled during fume events is a mystery. Would a survey of frequent flyers, other passengers and airline employees who have become ill on airline flights be a possibility? Thank you! PS: I have a large collection of evidence.